Michigan PKU

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Cooking Class a Success!!

Written by John LaPrad

Tuesday, 10 November 2009 19:35

The cooking get-together was a big success.
We had many families represented and a number of kids were there too. Using the cooking classroom at the CMU dietary school, we had 5 different cooking stations going. The kids were also able to get into it, making lo-pro cookies and muffins themselves!

More details to follow.

Cooking Class Coming Up

Written by John LaPrad
Monday, 21 September 2009 22:40
Low Protein Cooking The Children's Hospital of Michigan Metabolic Clinic is sponsoring a cooking event. It will be held at Central Michigan University Wightman Hall room 110. This is a great kitchen complex with multiple stoves and prep areas. There will also be a special track for the kids ( age 9 and up) to show them some basics. Saturday November 7th. 2009 Registration 9:30am Class 10 am till 3 pm Mount Pleasant, Michigan Please Call June Ventimiglia RD at 313-745-6042 to RSVP
Last Updated on Tuesday, 06 October 2009 17:46

Blue Cross Food Coverage

Written by John LaPrad
Wednesday, 12 August 2009 18:09
Michigan Blue Cross is now covering metabolic foods. Here is link to the form to fill out: http://www.bcbsm.com/pdf/ map_metabolic_diseases_and_foods.pdf
Last Updated on Wednesday, 09 September 2009 12:24

PKU national legislaton is moving forward!

Written by John LaPrad
Wednesday, 09 September 2009 10:32
The National PKU Alliance has been working hard on legislation at the national level, and, together with the help of many of us who have talked to our legislators, and sent in personal stories has reached a mile stone. "Senator John Kerry from Massachusetts announced on September 01, 2009 that he is drafting legislation to federally mandate insurance companies to cover medical food and formula treatment for thirty inborn errors of metabolism, including PKU! The final draft of the legislation is being written, and Senator Kerry will be introducing the legislation on the floor of the Senate soon. We will release details of the proposed bill as soon as they are available. Thank you everyone who is helping with this bold and ambitious effort! We will keep you posted as we move forward in national legislation!" (NPKUA Announcement).
Last Updated on Wednesday, 09 September 2009 12:26

Health Care Reform and PKU

Written by John LaPrad
Wednesday, 22 July 2009 20:03
There is a lot of talk these days about health care reform of one sort or another. Regardless of who wins the current debate in Washington, this is a great opportunity for the PKU community to make itself heard and to get coverage for low protein medical foods into the bills. The 'National PKU Alliance' (http://www.npkua.org) is working vary hard on this issue right now. They are meeting personally with all the Health Legislative Aides in Washington to educate them about PKU and the need for medical food coverage. We need to call our representatives -- phone calls have the most impact-- and voice our support for a PKU bill and medically food coverage. We do not have to go into lots of detail on the phone. We do not have to educate them, that's already being done. We just want to get our support of PKU in the phone log. To find your three Representatives in Washington, two senators and one house rep, go to this site and fill in you address: http://www.congressmerge.com/ onlinedb/index.htm Call them and ask to speak to the Health Legislative Aide (health LA) if possible. This is very important and this is the time we can get action on medical food coverage for the entire nation. If you want more details, and information, I will post additional material about this effort and the need for medical food coverage in the resources section of the web site.
Last Updated on Wednesday, 09 September 2009 12:25